Ailing NY Toddler has the Heart of a Champ, Wowing Doctors and Family

Jack Michael Foley points to image of his uncle, FF Michael Kiefer at Wall of Remembrance in Coney Island. Kiefer died on 9/11 — and Jack’s middle name is Michael in his honor.

Two-year-old Jack Michael Foley is all heart. The feisty red-headed boy — who loves to play baseball with his dad and can wink at girls on command — was born with only half a heart.

But that hasn’t stopped the Long Island toddler — nicknamed Super Jack — from living life to the max and melting the hearts of everyone who meets him.

“The doctors have to brace you for the bad stuff, but I wouldn’t give him up for anything,” said Rob Foley, Jack’s 38-year-old firefighter dad. “We want to get the word out to help other parents who are going through this same journey. There is hope.”

Diagnosed before birth with hypoplastic left heart syndrome, or HLHS, Jack has a rare and complex heart defect in which the left side of the heart does not develop. He is alive because of two surgeries performed by Dr. Emile Bacha, chief of congenital and pediatric cardiac surgery at Morgan Stanley Children’s Hospital at New York-Presbyterian Columbia. Bacha, whose team does about 35 of these surgeries a year, operated on Jack when he was 4 days old and again at 4 months.

On Friday, he met with Jack’s parents and grandparents to prepare them for the last of the three complex surgeries, scheduled for October.

“It’s half a heart. That is why it is so lethal,” said Bacha, adding that babies born with this defect do not survive more than 10 days unless surgery is performed right away. “Jack is doing outstanding. It bodes well for his future.”

About 960 babies are born with hypoplastic left heart syndrome each year in the U.S., the U.S. Centers for Disease Control and Prevention estimates. In this syndrome, the left side of the heart can’t properly supply blood to the body because the lower left chamber — or left ventricle — is too small or, in some cases, may not exist.

In addition, the valves on the left side of the heart — the aortic and mitral valves — don’t work properly, and the main artery leaving the heart — the aorta — is smaller than normal.

After the three heart surgeries, many, but not all, kids undergo heart transplantation in their teens.

Lauren Kiefer-Foley and her husband were thrilled when she became pregnant with the couple’s first child in 2010. What they never expected was that a routine ultrasound at 5 months would show the left side of the baby’s heart was not developing.

A special-education teacher in Far Rockaway, Kiefer-Foley, 33, said the couple decided to go forward with the pregnancy.

On April 25, 2011, Jack Foley weighed in at a healthy six pounds, 15 ounces. He wasn’t blue. His lungs were loud and clear and he was home from the hospital just 10 days after the first high-wire open heart surgery.

“He defied all the grim things that many doctors told us would happen, before we met Dr. Bacha and Jack’s cardiologist, Dr. Sean Levchuck,” said Kiefer-Foley.

“I am moved to tears every day, and in complete awe when I look at my son laughing, swimming and playing like any other normal, healthy kid,” said the mom, who lost her 25-year-old firefighter brother, Michael Kiefer, on 9/11 and used Jack’s middle name to honor him.

“I still have fears every day of the ‘what ifs’ because there are so many unknowns when it comes to dealing with HLHS, but I am trying very hard to push those thoughts out of my head and enjoy every second with him,” she said. “I believe with all my heart that my brother, Michael, is watching over Jack and giving him the amazing strength he has.’

“I am just so grateful he is doing as well as he is,” Kiefer-Foley said of the child who loves his grandpa’s meatballs and delights in making people laugh. “He is such a character.”

And like most families, mom and son have their bedtime rituals. The Foleys’ includes a special prayer, one made more meaningful as they anticipate the upcoming surgery. After Jack brushes his teeth, mom recites St. Jude’s Prayer for a sick child:

“I place myself and my child in your care at this difficult time. Pray for us; help us know that we need not face our troubles alone. . . . Ask our loving God to fill us with the grace to accept whatever may lie ahead for us and our loved ones …”

Before Jack climbs into his crib, the little guy in his feet pajamas crosses himself, and when his mom finishes reciting the prayer, he puts his two chubby hands together, places them over his heart, and together mother and son whisper, “Amen.”